Monday, September 21, 2009


After my wonderful lovely fall down the stairs I went to emergency, had x-rays, got poked, prodded, etc. and sent home with no answers.

At my follow up appointment with an ortho surgeon on Thursday they booked me in for 9:30am. I got there, and I signed in... waited... waited... finished the book I was reading... waited some more, they brought me into the little "room" followed by more waiting...

Out comes this nice little lady, after looking at my x-rays from emergency, and she has a posse of 2 additional doctor-type people. She's stage whispering "You guys should talk to that lady right there," she points at me, "she's interesting."

Having someone call you interesting in normal social situations is perfectly acceptable. It's nice when people think you're interesting. But in a hospital, when someone says 'interesting' they mean 'Medically Interesting' which means a lot of ogling and a LOT more poking, prodding, twisting, pulling, stretching, and PAIN.

So the nice lady comes over, and she says "You have Ehlers-Danlos Syndrome? Hypermobility type?" I say "Yes, you've heard of it?" to which she replies, "I've seen several people with EDS."

At this point I'm sure there is a look of utter shock on my face.

Then commences the poking, prodding, pulling, twisting, man-handling, stretching, and other various torture. When all of this is finished, the nice lady calls over her 2 partners in crime, and says to me "Don't tell them you have EDS." Once the guys get over there she promptly tells them "It's NOT in her head... It's all in her collagen" (with a conspiratorial wink to me). Then she leaves them to torture me some more.

The first guy goes through the whole process again, asks me about previous injuries, laughs at me a little (in a concerned, and caring way). Then says "You have Marfan Syndrome." To which I reply, "Nope, that's my husband, try again." I figure the guy gets some points for trying...

Second guy goes through the whole thing, and comes up with Ehlers-Danlos, but he's not sure which type, because there's "Like three different types, right?" It's MY turn to laugh now as I inform him there are many more than 3 different types, and I have the Hypermobile type.

At this point I got to show off my pretty Medical ID Dogtag (, on the front is my name, and on the back it says:
The nice doctor guys said it was nicer than a lot of the bracelets they've seen. I agree.

After all of this fun, I am nearly crying because of the ridiculous torture they have inflicted upon me. And the first guy tells me it's a couple of stretched tendons, and I need to go buy a brace, and wear it "until it's healed" no time frame on that one.

I'm VERY VERY tempted at this point to go back and request that they cast the stupid thing, because this brace, in order to be effective, needs to be TIGHT. When it's tight enough to be effective, it either cuts off some circulation to my toes, or it digs into my shin, and the top of my foot (or both). It also has the added bonus of needing to be removed for sleeping. Waking up at 3am on a Saturday is bad enough without the "HOLYMOTHEROFGODPAIN" that comes out of my mouth because I had the nerve to move my foot as I slept.

The only problem with this is I work for a living, and taking another half a day off to go to the cast clinic is not really an option.

So for now, I get to pretty much suck it up and deal with it.
I'm not.

Spellcheck is funny, it doesn't recognise: Ehlers, Danlos, Hypermobility, Marfan, Hypermobile, or HOLYMOTHEROFGOD as words...


elise said...

Oh, the joys of going to a teaching hospital! Unless that is standard procedure for Canada! :(

Did the main doc give you any feedback about your X Rays? Wouldn't a cast offer it's own set of pains/irritations? Skin breakdown, itching, atrophy? Check out for some braces you might be able to wear at night.

Stupid doctors.

Yes, I like being called 'weird' or 'interesting' in normal situations and typically say 'thank you' in response. There is that older saying 'why be normal?'. Normal is boring. But... being too 'interesting' in this case is really no fun.

What led you to get a Medical ID? Your allergies or EDS? or both? Just curious, if you don't mind.

Miss you!!!
(my security word for today is 'stroche' - some how seems fitting.)

BubbleGirl said...

Lovely to hear from you!

I don't know if it's a teaching hospital or not. It could just be a doctor-type p*ssing contest, along the lines of "I have the most interesting case of the day... that chick... come see!"

Main doctor lady just confirmed it was stretched tendons, and remarked on how un-stretchy my skin is for EDS. I think a cast would be better in the long run. I wouldn't need to wear it as long, nd it would probably be a walking cast from the beginning, and I would be completely UNABLE to injure it further, without actually TRYING to.

I decided to get the medical ID mostly for my allergies, and it also might prompt emergency medical staff to look for more information. I have a lot more info in my wallet as to the allergies (mostly food), and the risks associated with EDS (possible artery/vein rupture, etc.).

In my wallet, I have a clear plastic thing with my license behind it. If you take out my license, you can see "MEDICAL INFORMATION SHEET" in bright red, and behind that, there's my "List of Alleries" sheet. So hopefully if I'm unconscious and dislocated, it won't be because someone stole my wallet.

Gumby / Mommy Zebra said...

"Interesting" i just love the word..Its like Why dont you just announce it over the loud speaker for the rest of the med students to come and see. One time last year I was seeing a "hip specialist" and at my last appointment..when he told me there was nothing he could do for me...he still managed to bring in a med student and show her how my hips snapped internally and externally for no apparent reason...Other than to show her I was "unique" and cause me Ahellofalotofpain for the rest of the day! Its like a double edge sword, dont get me wrong I would love to school newbie docs about EDS but at the same time, its in the books, do your homework!

Take Care of that ankle!


Veronica said...

I can't believe he said wear the brace 'until it's all healed'. Cos we all know how WELL our joints bounce back after we injure. And we all know how the healing process goes.

Sorry they made you bend and hurt.